Caregivers helping caregivers

Lewy Body Dementia 3 Stage System

A little over a decade ago, a group of caregivers for spouses with Lewy Body Dementia put together a list of symptoms and attempted to break the progression of LBD into 7 stages. (That list can be found here) For years, it has stood as the only available staging document for caregivers to use as the medical profession has not attempted to tackle such a task due to the complexity of the illness. While the caregivers’ list has been very helpful for giving families an idea of the types of symptoms to expect and when to expect them, it was often useless to those whose loved ones did not follow the progression of symptoms in the same order. Many caregivers complained that their loved ones would have symptoms from stage one and stage four at the same time, for example, or would bounce back and forth between stages.

In 2016, Very Well.com released an article simplifying the progression into three basic stages (That article can be found here) They compiled this based on input from several reputable sources which can be seen at the bottom of the article. For me, this system made much more sense and fitted my husband (and every other person I’ve known with LBD) much better.

According to this article there are basically three stages: (I expanded their explanation by adding examples of symptoms and including information from other sources, including interactions with hundreds of caregivers)

Early stage: Behavioral problems

At the beginning of the illness, behavioral issues are usually the most problematic. The individual will typically experience depression, hallucinations, delusions, REM sleep disorder, paranoia, and confusion. They may also become aggressive, angry, and undergo personality changes. While not all will experience all of these symptoms, most will experience at least some of them. (For example, my husband never became aggressive) It is during this phase the diagnosis is usually made. The individual may either have no movement issues at this time, or very minor ones like mild stiffness or tremor.

Middle Stage: Movement problems

During the Middle Stage of the illness, the behavioral issues tend to level off and movement issues arise. This is not to say the behavioral issues stop, but they don’t seem to progress as rapidly as they did in the beginning and in some cases, actually improve. It is during this stage the muscular or Parkinson’s-like symptoms develop. The individual may lose control of bladder/bowels. They begin stumbling/falling, and may develop swallowing difficulties. The Lewy Lean might become evident. By the end of this stage, they will likely need help with most if not all of their ADLs (activities of daily living) and will often need placement in a care facility or the caregiver will need to hire home health care aides.

Late/final Stage: increasing weakness

At this point, the individual becomes weaker. They will likely need a wheelchair for most transports, will begin dropping water glasses etc. They reach the point where they can no longer feed themselves. The weakness continues until they eventually succumb to the disease. Often, they develop an infection, pneumonia, or some other illness that will end their life, however some simply shut down. (more on that can be found here) It is rare for this stage to last more than a year, however some have been known to be bedridden for two years or so. *Remember all of these progressions are gradual! They don’t simply wake up one day unable to feed themselves ever again. They might need help one day, but not the next, however eventually they need help each time.

Some things to consider:

It is impossible to diagnose Lewy Body Dementia without an autopsy. Those whose loved ones are not following this progression may possibly have a different type of dementia or more than one type of dementia. It has been estimated that 40-50% of those with dementia have more than one kind. (More on that can be found here)

The main difference between individuals with LBD isn’t the progression of symptoms, but the time each individual stays in each stage. Some may be in Early Stage for 3 years or more while others might enter the Middle Stage after only a few months. My husband was in the Early Stage for about 2 years, Middle Stage for about 2 years and the Final Stage for a little under one year.

There is no clear cut step between stages. The symptoms morph slowly from one phase into the next. For instance, your loved one might start having swallowing issues, then suddenly improve for a few months before those issues return. Lewy is tricky that way.

The average life expectancy for Lewy Body Dementia is 5-7 years AFTER diagnosis. Many caregivers can recall symptoms for years before diagnosis, but the statistics for survival do not take that into account. Please remember this is an average. Some will not live as long and others will live longer. (A study on that from a caregiver support group can be found here)

If a person was diagnosed with Parkinson’s disease several years before Lewy Body Dementia was added (meaning they would have had movement issues first) it’s important to note that most neurologists would diagnose them with Parkinson’s Disease Dementia instead of Lewy Body Dementia. The general rule of thumb is that PDD is diagnosed if the individual has had Parkinson’s for more than 2 years before the dementia symptoms arose, however, the two dementias are extremely similar and treated the same. (more can be found on that here)

Final thought:

I personally found this method easier to understand than the more complicated systems that list dozens of symptoms neatly categorized into several stages. Individuals are too different for that sort of method to work consistently. I’ve also noticed when working with different neurologists, they tend to use the terms early, middle, and late when referring to their patients instead of a complex order of stages. Not once during the time my husband was seeking treatment from either the Cleveland Clinic or our local neurologist did any of the doctors involved say he was in stage two or stage four, etc. They simply said, early/beginning, middle or late. (Some doctors will used the FAST scale, but that is usually for Alzheimer’s)

I think it’s important for caregivers to look at all documents pertaining to possible symptoms and time frames so they have enough information to make important decisions regarding care and finances. However, attempting to pigeonhole your loved one into a rigid staging system might prove to be more frustrating than productive.

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Hi, Lisa. Generally I agree that simplifying the discussion is usually helpful.

I would encourage others on the LBD journey to check out the lists of symptoms that might happen (all usually do not happen to one person) just to be prepared in case they appear “out of the blue”. Then the caregiver is forewarned and thus more equipped to address the symptom without wasting time and energy either personalizing it, if it is behavior that can be hurtful emotionally, or assuming there is another cause for it.

A hallmark of LBD symptoms is the random and fluctuating nature of them. They can all come and go in early, middle, or late stages.

Good read as always Lisa thanks so much this one is very helpful I’m naïve ( for lack of better word) and continue to be optimistic about Johns progression with this disease, I am interested to watch how this goes for us. I like to believe we are on the very long term plan if in fact there is one. I actually think there is and I’m one of the lucky ones that is on that slow train.

Thanks for commenting, Pat! I think the list of symptoms is really good to have too. I used it a lot when my husband was ill. I think this staging approach wasn’t meant to ignore specific symptoms, but to back up a little and look at the big picture of the disease. There is a lot of fluctuation, but those with LBD will still go through this general progression. The thing that resonated with me when I read this was that this was the way all my husband’s doctors approached his progression. They all used the terms early, middle, or late. They knew that trying to nail it down into several specific stages wasn’t particularly useful. (I’ll edit to include depression)

Hello. Thanks so much for this useful information. I’m a therapist who has a client with all the symptoms of LBD and I’m trying to learn all I can about it and to try to help ease some of her suffering. Her hallucinations are extremely terrifying and vivid and show no signs of abating though she appears to be in the second stage described here. I’ve ruled out a psychotic disorder as the hallucinations began when she was in her 70’s. The extremeness of her nightmarish hallucinations and paranoia seem atypical of LBD. Its been hard to get a diagnosis as she will not entertain any notion that what she is experiencing is not concretely real and does not trust doctors. I suspect the intensity of the hallucinations may have to do with also having PTSD. My question is, do you know of anyone else with LBD having these type of symptoms, and where else might I look to find out more information

The symptoms you’ve described are very common for LBD, though getting a diagnosis is notoriously difficult. There are no tests that can definitively diagnose the illness short of an autopsy and at that point, it’s too late. If you’ll look at the top of this blog you’ll see a “Helpful links and groups” choice. Click on that and you’ll find several places for more information. Good luck to you and your patient. Hopefully you’ll be able to help her with this difficult situation.

Would you mind if I shared this post to a LBD carers’ support group on FB? My mother has LBD (diagnosed two months ago by the third neurologist we have seen). The REM sleep disturbances, mood changes, personality changes began two years ago, and a slight tremor in one hand shortly thereafter. Many members of the Facebook group, myself included, are seeking some kind of guideline to Lewy, like you posted. Anything else I have read has basically been along the lines of “who knows!” are: progression.